Diagnosed with moderate COPD today

[Judie P]

Ii have never smoked, not been around smokers, only in my 20s in New York did I come in contact with smoke when I went to dancing places.  None of my boyfriends, husbands or family members smoked either.  Could Primary Sjogrens really cause lung breathing tests to show up as COPD?  I am in California and the smoke from the fires were really bad last year (and the year before), and they are thinking that would make it moderate.  The doctor is puzzled.  Any help here?

[irish]

Do you see a pulmonologist? Sjogrens can cause issues and I am thinking it was pulmonary fibrosis that was with the Sjogrens. Have you onoticed if you are full of a lot of sputum in your lungs. I have been on a nebulizer for about 12 years. I was given albuterol for my nebulizer and it didn't do much for me. I asked my immunologist if I could have 2 amps of sterile saline to millx with my albuterol. This helped a lot. It moistens the bronchioles and  helps make it easier to cough up the thick mucus. I also am to take 2 mucinex twice a day. The generic for this is Guaifesen and can be found in most grocery stores pharmacies and some other stores. Shop around because they really overcharge for this. Mucinex brand is outrageous. This med helps thin the mucus in our lungs and sinuses.

If you are having trouble getting answers from your pulmonologist I would ask for a second opinion. Not all docs understand the relationship of lungs and autoimmune diseases. Also, COPD can occur in people that don't some. I just read that they are diagnosing more people with COPD that haven't smoked. Docs feel it is the poor quality of our air these days. If a person lives in a new house or relatively new home I think it would be worthwhile buying a good air purifier. There are so many chemicals in wood, carpeting and paint these days. I don't believe the info that says products are safe as they have such bad odors. I have even bought drapes that I had to take back because the dye smelled so bad and made me cough. Good luck irish

[Judie P]

Thanks, Irish.  Unfortunately it was not a pulmonologist.  It was my regular practitioner giving me the results of my spirometry.  I might try muconex.  I will have two inhalers now.  One every day and one for emergencies. 

[SunshineDaydream]

Chronic Obstructive Pulmonary Disease (COPD)
In a cohort from Sweden, 37% of primary SS patients fulfilled COPD criteria over 11 years of followup (21). COPD was 5 times more prevalent among ever smokers, but even the prevalence among non-smokers was unexpectedly high. Primary SS patients had significantly decreased VC, TLC, FEV1, FEV1/VC and DLCO while the RV was increased in comparison with expected values. Respiratory symptoms, radiological abnormalities, and inflammatory and serological features of disease had no association with PFT variables, although in previous studies, an association was shown between PFT variables and anti-SSA antibodies (22), focal sialadenitis (22), hypergammaglobulinaemia, and ?2-microglobulin (23).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4393654/

[irish]

It is good to see a pulmonologist as they have more expertise in lung disease. I have mild asthma since 1980 and have been using inhalers since then. I use 3 different inhalers now and do the albuterol nebulizer. I see my pulmonologist every 6 months.

The asthma can muddy the lung issues also. There are so many inhalers now and several are used.  Generally steroid inhalers are also used to decrease the inflammation in the lungs that occurs wth asthma and most other lung issues. Hope you get a good treatment regime and feel better. Irish.

[Carolina]

Hi Judie:

My Immunologist sent me for a spirometry because I have an Immune Disorder (deficiency in antibodies G and M).  My Immune Disorder is called CVID (Common Variable Immune Deficiency).

I have a very mild form of COPD (small airway obstruction), and really didn't know I had it.  It is very common for people with CVID to have lung damage, so my Immunologist had me tested since I am part of the cohort for her research.

I HAVE noticed in the past 5 years is that I've had 2  episodes of cough induced asthma.  A form of asthma brought on by coughing, usually from the coughing of bronchitis, but in my case from a very high level of dust and a feather pillow.   I just forced myself to stop coughing and the wheezing and  gasping stopped.

And when I try to do the deep breathing for meditation and relaxation I don't have the sense of truly taking deep breaths.  My lungs don't really expand and fill deeply like they used to.

I don't have a nebulizer since I really don't usually have trouble breathing. 

I do use Mucinex twice a day, and I have for years.  This is because my mucus becomes so thick and gluey that my nose and throat get blocked and I can't breathe through my nose properly.

My mouth is so dry that if I breathe through my mouth at night it turns into a 'Brillo pad' and then the mucus begins to clog up my throat and I can't swallow and I wake up feeling strangled.

I also use Nasocort twice a day, which helps thin the post nasal drip.

Ain't we got fun?

Regards, Elaine

[Judie P]

I have a student who works for pulmonary doctors, but they don't take my insurance.  A cardio pulmonary doctor did read the results and gave it to my general practitioner.  I go to the general practioner first before any other doctor, as that is how my health system works.  So, I sent out a message to my GP as you will see below.

Hi, I got on line to look up COPD and found out that Primary Sjogrens, which I have, can be responsible for it. That might be why the rheumy ordered the test years ago. I put the topic into the Sjogren's Forum to see what responses I might get from Sjogren's patients. That is the only thing I can think of with not ever smoking or second hand smoke. See you in a month. Judie Palmer

He then wrote back to me and I was very happy that he took the time to learn more about Sjogrens.  I am not happy that I have COPD, but am happy that he is taking the time to understand SJS.

Thanks for your message, Judie.
Funny, I also did some research after our visit and found several journal articles showing a COPD-Sjogren's link.
Restrictive lung disease (which you do not have based on these tests) is the type of lung disease that we typically think of being associated with Sjogren's, but there seems to be several papers written in the last few years that show an association between Sjogren's and COPD-- so I think this explains it.
I wrote Dr. Bajpai to keep her in the loop as well.

Have a good weekend,
Scott Karpowicz, MD

Dr. Bajpai is my rheumatologist.  How many of us have the opportunity to get a general practitioner who is willing to go the extra mile for us?  It made me happy.  I needed that so bad yesterday.

Your replies are making me happy, too.  I have no one here to talk to about it.  Love and hugs to you all.

[irish]

Im impressed with your doctor. So many of them just pooh-pooh things we tell them related to Sjogrens. Sounds like your 2 doctors...GP and Rheumu.... may well keep things in control for you. Good luck. Irish

[Scottietottie]

Hi 

It's possible to get COPD as a result of genetics. There is a deficiency called Alpha1 antitrypsin deficiency. 'Normal' people have a gene with an MM combination and are only likely to develop COPD as a result of smoking. some people are unlucky and end up with a ZZ instead (I cant remember which specific gene) Anyway - a ZZ combo can result in COPD developing with no smoke involved. I have an SZ combo - which made it more likely to develop COPD - and I smoked - and I did. there is quite a lot about it online. At one stage The American Lung foundation tested for it for free - I dont know if they still do.

Take care - Scottie

[Judie P]

I will check into that Scottie.  Thank you!

[Deb 27]

Sorry Judie, we have enough to deal with and then a new diagnosis on top of it. It's a shame.